Tuesday, 28 September 2010

Thinking of the Weston family today x

Today is the funeral of Kevin Weston. Jan, his wife, has become a good friend through the mesothelioma facebook pages.
She has been so brave and courageous all through this journey and Kevin has been admirable.

Some of his last words brought a smile to his face when he talked of having songs in his head.
For some reason, he couldn't get Jedward off his mind. Poor man, so today will a Jedward free zone and all my thoughts will be with Jan and family at 12:00pm.
She has asked that anyone who wants to, "to play a bit of Marley and raise a glass for Kev".

Please feel free to join this event in your own homes or where ever you are.
Love and thoughts are sent to Jan and family x x x

Monday, 27 September 2010

Mesothelioma UK event.

I am looking forward to the mesothelioma UK event on Saturday. It has been very successful this year, word must be spreading about the great work they do.
There are reserve places only and everyone on the reserve list I hope gets a place.
I will be looking forward to see the Professor, I saw him the last time in June 2009. He will get an opportunity to talk about his treatment which has changed a lot of lives and given others a small hope before they lost their lives.
There will be many mesothelioma warriors there who I have met on facebook and other warriors who were a big part of my determination to be here. One of them being Heather and Alan.
When I was given the devistating news in January 2008 that Theo had progressed, I was so upset and went to stay with them in Derbyshire. They gave me back my fight to carry on. Also Pat and Tony, Tony died in 2008, Who were intrumental in me finding the Professor.
Pat won't be there but she will be there as will Tony, in spirit.

I think I may need another dilatation as I choked on my tea last night. Although that happened, there have been improvements, I can manage a bread roll now and am enjoying toast again.
I will be seeing Dr TOF in 2 weeks so will hopefully be told the good news that I am TOFless.

Sunday, 26 September 2010

Great night last night.

This was the picture that greeted me when I got in last night, 2 tired little kitties peering up from the chair.
Wendy, Lyn, Jacqui and myself last night.

Yesterday was very good, firstly the TOF seems to be fine. eating is a lot better, I am not choking on it so the stricture has gone which is great.
The washing machine has decided to say it wasn't going to play anymore. The drum paddles have come off and it will rip clothes to pieces if I put them in it so Siobhan and I headed to the local Comet to get another one.
Hopefully it is being delivered today otherwise my poor Bean will be going to school in a dirty uniform.
In the evening I went to my friends house for a meal. Wendy has just had her 50th Birthday and looks nowhere near her age. Also there were Lyn and Jacqui. We have been friends for 23 years.
Wendy was a real sweetheart, She knew about my op on Friday and made a meal for everyone that was easy. We all had soup, macoroni cheese with vegetables and profiteroles. It was delicious.

Friday, 24 September 2010

And here he is!!!

This is Dr TOF from Taunton.
This is after the procedure which went very well. I am feeling a little tired and have a sore throat but apart from that, Am fine.
The Dr's name is Dr Stirling Pugh and he is wonderful.
I will be seeing him again in 2 weeks time for a CT scan and he will check that all is well with the clip.
Thank you so much Dr Pugh for helping me sort out this problem, I hope it works x x

It has arrived!!!

The day has arrived that i have been antisipating for weeks now, the day I get my fistula sealed. I am nervous but have confidence in what Dr TOF is going to do.
He has been an amazing help, searching the internet for information and looking for someone in the UK who can do the procedure.
there was 1 Dr in Basildon who closed a fistula caused by removing cancer from the oesophagus.
The other is a Dr in Italy who successfully closed a congenital fistula that was bigger than mine.
He offered me these 2 options but I said I would stick with him after all, he has worked so hard to help me.
I am also having a dilatation which is a procedure to stretch the narrowing I have in the oesophagus caused ny the 2 stents I had put in.
My procedure is at 12:30pm today so by 1:00pm I will hopefully be TOFless, and for those of you who need to go to spec savers, I said TOFless not TOPless : )
the link is a small video showing the procedure I am having today.
(for those of you who are interested)
Topless wouldn't be a pretty site!!!!

Thursday, 23 September 2010

So Angry!!!!

The article in todays local paper has my blood boiling. People who know nothing about this disease are ripping into Debra, a meso sufferer about compensation. When will these people realise that the money is the last thing on the mind of a sufferer. It helps with bills and sorting out the future but I am sure every mesothelioma sufferer would gladly give up the money to those who complain and they can have it, as long as they take the pain, heartache and horror that goes with it. Do they really think that it is all about suing, it isn't. The families of people lost will tell you how heart breaking it is to watch someone gradually fade away. It is an awful disease, it has no cure.
Don't bash the victim in all this. A lot of solicitors are like vultures at hospitals, they will travel miles for a sufferer because they know 9 out of 10 times they will win.
I was given information about a claim when I was diagnosed, by the hospital staff.
All who are standing there judging should be grateful they are not standing in that persons shoes.

(The article is on the news page)
I wouldn't wish this disease on my worst enemy.

Busy day today.

Yesterday was good, I went to the mustard tree and met Geoff (pictured above) and also met Dave and Ross. It has to be the best medicine.
Geoff has had his first treatment with the Prof.
Today I am going to try and catch up on a few things, I have to get a new washing machine as the drum on mine broken. The plastic bars on the metal drum have broken which means that any clothes will be shreaded.
I am picking up the rail tickets for tomorrow s I am off to Taunton for the TOF op.
Kieran has had 3 very good weeks at school. He won the student of the week trophy last Friday and has proudly took it school every day and brought it home.

Wednesday, 22 September 2010

More warrior meets : )

Cher's snowdrop painting she had printed on T-shirts.

I am going to the mustard tree today to meet Geoff, another meso warrior recently diagnosed.
He has been looking into treatment with Germany, I hope it works as I do with all that see the Prof.
The Mesothelioma UK even is fully booked but they are taking resplaces on reserve. This year has been a good year for them, the busiest they have had since they started. I thunk that is great, the word is spreading. Many people are not prepared to lay down and die any more, they are prepared to fight as are the families who have lost their loved ones.
I am looking forward to going on the Friday evening to London as a lot of us will be meeting for the first time after chatting on facebook. Facebook has been a great tool for support for all. It is fantastic to see people and encorage each other to be positive. That is what the meso UK meeting does, it is such a positve event that when I first went in 2007, I came away feeling powerful and armed with information I knew nothing about.
It will be great to see the Prof again and Cher from Australia, who is having treatment with the Prof, will be armed with T-shirts for everyone. She painted a beautiful picture of snowdrops and had had it printed on a T-shirt. I have spoken to Cher but as yet, we haven't met.
First of all I have to get the TOF op out of the way on Friday. I hope it works, I can't miss that meeting!!!

Monday, 20 September 2010

Kevin Weston

It is with great sadness that I report the loss of another fine warrior.
Kevin passed away last night with his wife, Jan, at his side. He was 52 years old, far to young to leave his family.

Jan has been an admirable person and allowed the warriors into this very private of events in her life.
We all support her and her family.

On behalf of Meso and me we send condolences and love to the family at this most painful of times.

Todays blog is dedicated to Kev and his family.

Sunday, 19 September 2010

Sunday morning.

I am sat on the sofa, in my dressing gown, thinking about friends going through the effects of mesothelioma.

I am looking forward to the meeting in London on 2nd October, The Prof will be there as will many warriors I have met on my journey. We are hoping to get a picture of the Prof with his patients, how good will that be. Such a shame that all of them can't be there as they have either lost their lives or can't travel. One thing is for sure, The Prof is looking for a cure. Every patient that sees him knows that it is a trial and are willing to put themselves in his hands. He gives so much hope to all he meets. He lets them all know it isn't a cure but he will do his best, what more can anyone ask.

I have been feeling very tired over the past few days. I need to get my mistletoe boosted and will have to find some time to do it. Next week is the op for the fistula, that is being done under sedation. I am hoping that it resolves my problem with chest infections. The week after is the meso UK meeting and I have a gap, I will try and sort something out before I go away with Kieran and my friend at the end of October.

Saturday, 18 September 2010

Well done Kieran!!

Kieran has had a fantastic start to the new term at school, he is a lot happier and is enjoying his new class.
I was so proud of him yesterday, he won pupil of the week which means he gets to display a trophy on him desk at school all week.
Amber the kitten is settling in well. She and Stork have become good friends and play a lot around the house. They also snuggle up together and go to sleep.
Cher from Australia sent a box of T-shirts which she had printed. The box has become a great toy for Stork and Amber.

Thursday, 16 September 2010

Great news yesterday.

The meeting with warriors turned out to be better than expected. It was so good to meet Bill and his wife, Ross (again) and Peter and Pam. Peter has just returned from Germany and we are all hoping he gets a really good result from this treatment.
Also there was the specialist nurse, Kate, who I met when I was diagnosed. Kate said that she had money from the McMillan services to which she would like to use to set up a support group for meso patients and their families. She talked to all of us about it and we all agreed, it was a great idea.
So, on the 13th October our support group will be launched in the mustard tree at Derriford Hospital, Plymouth. Kate said that between 35 and 40 people are diagnosed with Mesothelioma every year and this support group has a much needed place in our area.

Thoughts are with a facebook warrior friend today as she waits with her husband by his hospital bed for the imminent to happen. Such a sad day for her and her family. Thoughts and love are sent to them.

Wednesday, 15 September 2010

More warriors to meet : )

I went out with my friend, Ali last night to Tavistock. There was an open air event and a guy called Seth Lakeman was playing. It was wet and I found out that my boots are not water proof.
Part way through the evening I had a text, the boys were fighting and could I sort it out. I think I had only been out for an hour!!!
I rang them and talked to Kieran to try and calm him down which seemed to work. Siobhan had got very stressed with it all and had walked out.
Ali and I watched her idol and then made our way home. I made numerous calls throughout the evening to make sure all was ok and that Siobhan was home. Next time I will have to take Kieran with me, he won't like that!

Today I am going to meet some new meso warriors one of whom has just had his first treatment with the prof.
This will be the first ever get together in Plymouth.
It is always good to meet others and swapped notes.

Monday, 13 September 2010

TOF news.

The narrowing is clearly seen on the scan above.
The fistula (tube) can be seen between the oesophagus (food pipe) and trachea (windpipe). The little gap between the 2 is the tube.

Taunton went well. Siobhan and I saw Dr TOF who showed us the pictures from the CT scan.
The fistula is clearly seen and there is also a narrowing of the oesophagus(food pipe). The narrowing was caused by the second stent I had put in and has been getting worse. I get my food stuck in the narrowing which then causes a reflux action I have no control over.
The fistula (tube) can be seen on the scan joining the food pipe and windpipe which allows fluid into the lung.
Dr TOF said he would do the procedure if that is what I wanted. There is a Dr in Basildon who has done a similar procedure on a person who had oesophageal cancer which created a fistula but not done anything on a congenital one. I also have the option to go to Italy and let the Dr's there do it as they have already done it on a 74 year old lady.
I have decided to stick with the man who has found all the information and was happy to help me. I will be having it done on 24th September. I will have a sedative as Dr TOF wants me to tell him if he is hurting me.... this has made me a little nervous, it is the same drug I had for the endoscopy and I am awake but don't remember any of the procedure afterwards. The drug is commonly known as the date rape drug. Dr TOF will widen the narrowing of the oesophagus and will also sort out the fistula.

I will have to sort out train times and will not be allowed to drive. Should be an interesting day, I just hope it sorts out the choking and chest infections.

Taunton today.

I woke up this morning with my old friend, chest infection. I did ask the GP for some more anti biotoics as I knew there was still a little more to clear up. She told me that having more antibiotics wouldn't be good a sthey wouldn't work when I really needed them.
I will go back this week if it gets any worse. I do wish sometimes that they would listen to me as I have had this infection for weeks. I want to get rid of it as I amy need to have an anesthetic for the TOF op if I have one and having a chest infection is going to make things worse in recovery.
I am seeing Dr TOF this afternoon and will find out the results of the CT and barium I had last week, I will also find out if I can have the over the scope clip procedure to seal up the fistula.
Siobhan is coming with me.
Tomorrow I am seeing Ali and Gina, we will be sorting out some things for her and then go out in the evening. I am looking forward to it.
I have to arrange to see a medical report at my Dr's surgery before it goes to my works occupational health department.

Sunday, 12 September 2010

Sunny Sunday.

It is a beautiful sunny day in Plymouth and I think Amber is in high spirits. She is like a demon kitten. I didn't get to sleep last night until late as she was messing around. Everytime I moved, she thought it was playtime.
Poor Storkie was trying to sleep too, when she started to settle, she nuzzled into him and was trying to find milk. He was so patient with her and washed her as she nuzzled.
Tomorrow I am off to Taunton to see Dr TOF and am hoping for good news about the fistula. I am hoping so much that the 2nd stent hasn't caused too much damage. It will be interesting to know what Dr TOF has to say.

: )

Saturday, 11 September 2010

Lazy day.

I haven't done much today at all. Kieran is with his dad. He is back tomorrow.
I was so pleased that his first week at school has been good. He has thoroughly enjoyed it, I hope it continues.
The kitten has settled in nicely and Stork has been brilliant with her, He is so gentle.
She is constantly after his tail, he wags it wildly to entice her.

Friday, 10 September 2010


Thoughts and prayers to Rita and Lisa over the loss of their wonderful warriors.
Lisa dad was celebrated yesterday and Peter passed away last night.

I am sure I can say on behalf of all who read meso and me, we are so sorry to here this devistating news and are thinking of both families.

Tuesday, 7 September 2010

Busy day today.

I met my friend this morning and had a coffee with her after a meeting at school. I then met my friend, Julie for lunch and completely forgot I was supposed to go to my friend Tina's house first to meet her and go to lunch together and meet Julie.
After that I came home breifley and picked up Rich as we were going into his bank to sort out a fraud action he had on his account. All was dealt with very well by HSBC.
I got home with Rich and waited to meet Ali, another friend, who I haven't seen since June. We had a very emotional chat and then it was back home....phew.... a very productive day.

I still have a pain in my back from the chest infection and little kitty, Amber, is so cute, she takes away a lot of the pain by being one. She is very sweet and wants to play with exvery thing. Stork is coming around and starting to like her.

I had a parcel from Cher in Australia this morning. She painted the lovely snowdrop picture and has had it put on a T-shirt. She said she was sending me 1 but turns out it is a box of about 10!!
Thank you Cher, they are lovely and I will wear mine with pride in London when I do my patient talk on 2nd October.

Monday, 6 September 2010

Taunton for CT and barium.

Siobhan and I went to Taunton today, in the rain. We left the rain in Plymouth and it followed us to Taunton. Siobhan and I had lunch in a cafe and then went off to the hospital.
I had the barium first, it was a bitter tasting drink, disgusting. Then on to the CT scan. This wasn't nice as I had reflux which made it difficult to lay down and hold my breath.
The radiologist explained to me before the CT that he could not see a fistula, here we go again I thought! He did see it on the CT scan and asked if I had any problems with eating. I told him I did.
I now have to wait for Dr TOF to contact me for another appointment to decide what happens next. I do have a stricture which the radiologist said is lower down. If I do have the procedure I am hoping that a dilatation can be doen to amend it.

Siobhan and I were followed home by the rain and were very tired. We got on an earlier train and after looking at the tickets, found it was a first great western and not a cross country train that we should have got. For confermation we rang.... Kieran!!!
He told us what train to get home. It is lovely having a trainiac for a son : )

Sunday, 5 September 2010

Quiet sleepy Sunday.

Amber's first night with us was a little restless. she stayed in Siobhan's room as Stork is always in mine and we felt it was unfair to shut him out. They seemed to get on a little better today with Stork even attempting to play with Amber but she got frightened and ran away. They are both asleep in a sitting room, Stork on the big chair and Amber on the sofa.

Kieran will be back today as he had a night away with his dad.

Tomorrow I am off to Taunton with Siobhan for a CT scan and a barium swallow to see if I can have the TOF fixed. I hope the second stent hasn't dashed my hopes of sorting out this problem.

Saturday, 4 September 2010

Meet Amber.

Kieran and I went to collect the kitten this morning and bring her home.
We have decided to call her Amber. She cried all the way back to our house but seemed to be quite happy once she was out of the cat box.
Stork isn't sure what to think. He hissed at her a couple of times and walked away. Amber wanted to get to know him. Once Stork realises she isn't going anywhere and that we still love him, he will be fine.
Amber is sleeping in Siobhan's room at the moment and we are all going to look after Stork and let him know that Amber isn't his replacement. If Cookie comes home, it will be wonderful but I don't think she will now.

Friday, 3 September 2010

School uniform day.

I went into town today with Kieran to get school uniform for him and get him ready for his return on Monday. Somehow we ended up on a train to Newton Abbot. Kieran informed me that when he went to the dentists, I promised him a treat for being brave. It was the station or a computer game.
The station won as it was cheaper : )

My chest infection is gradually going but I still have back pain when I sneeze or cough. I hope it clears up very soon.

Tomorrow we are getting a new kitten. It is a little ginger female one. she hasn't got a name yet, still thinking about what to call her. We all miss Cookie as she never returned home.

Thursday, 2 September 2010

Friends, shopping and other happenings.

I met a friend I hadn't seen for 10 years or more today and it was lovely. My friend, Mandy has been very poorly and is an inspiration to me. She had alopecia a long time ago and I watched as she coped with losing all her hair and wearing a wig. This attitude made me see things totally differently. It probably had an impact on how I coped with the meso diagnosis. It was lovely to see her and chat about what has happened in our lives since we last saw each other.
We were very good friends until she moved house and we lost touch.
I hope todays meeting is going to be the first of many more.

I have been feeling very tired and nauseous over the past few days. I think it could be that anti biotics. I can stick with them as I want them to get rid of this chest infection. I still have a pain in my back which hurts if I cough, sneeze or breath too heavily. I do have thoughts in the back of my mind that I hope it isn't meso in the right lung. I don't think it is but I can't help attributing every twinge with Theo. I hope he is having a grand ole time in Germany and stays there for even longer!
I have to get Kieran's school things together so tomorrow will probably be full of shopping for trousers, sweat shirts and a PE kit.
I will be seeing my little great nephew tomorrow who was born a few days ago. I am looking forward to that. I am the only one of my sisters not to have grandchildren, I will enjoy my sisters grand children for the time being : )